Wednesday, October 14, 2009

Strange Times

I'm in another very broken sleep cycle and feel fried from it. It makes me a little nervous when this occurs because it usually means a crash is in the works. Add the broken sleep with increased tinnutis, severe muscle pain, and a new symptom-muscle spasms-and you have the makings of some fun days. The fatigue from not sleeping well makes the cognitive issues worse so I hope that I remember to say all that I'm wanting to in this blog post.

I think I've mentioned before that my primary care physician was also an HIV/AIDS specialist. I say "was" because I found out Monday that he died last week from a pulmonary embolism. I had printed out the article about XMRV and went to his office on Monday to talk to him about it knowing that he would help me sort it all out. I had also hoped that he would have some ideas about treatments.

It's very unnerving because Dr. Scott is the second primary care doctor that I've had die in less than a year. My previous primary care doctor died the Tuesday before Thanksgiving last year after trying unsuccessfully to get out of a trapped eelevator. He fell to his death.

Dr. Scott told me the first time I saw him that he thought I had either a slow virus or a retrovirus. I wanted to show him the article and tell him that he was right. He was very involved in the HIV/AIDS fight and went to Africa on a monthly basis to provide treatment to AIDS patients there. While I didn't have the close relationship with Dr. Scott that I had with Dr. Kliman it is upsetting nevertheless.

I spoke with my ME/CFS doctor this week about XMRV. He is cautiously optimistic. They are in contact with WPI as well as other ME/CFS doctors throughout the country trying to figure this stuff out. They will be one of the doctor's offices who will be providing unofficial experimental treatments for XMRV so they are putting systems in place to accomodate everything coming their way.
It's worth noting that the AIDS epidemic occurred for some time before the HIV virus responsible for AIDS was discovered. Getting a diagnosis of HIV used to mean a death sentence but now with the medications they can render the virus virtually undetectable. Even though the retro virus is still there it is stopped in its tracks with the anti retroviral medications. This is why I'm hopeful.

Heres an interesting article about the discovery of the HIV virus. Apparently, one researcher thought it was HTLV which is the same retrovirus that DeFreitas found in 1991 in relation to ME/CFS.

The problem with these medications are the cost and side effects. The medications have to be taken daily and you can't miss a dose (even though people do). It's no walk in the park. You know what though-I don't care. I'll be a guinea pig. I told my doctor to put my name on the list for treatment. I want my life back. If I can't have it all back I'd settle for 50%.

I've come a long way since starting treatments for this but I was so far down in terms of functioning that I have a long way to go. One year ago I was basically bedbound with the few exceptions of being able to get out for a very, very short time a couple times per month. Now I can sit up for much longer periods of time, I can get out of the house a couple times per week and my bad days are nowhere near as bad as they used to be.

I know and have known many people with HIV. I lost many friends to the AIDS epidemic. I've seen the antiretroviral meds give people back their lives. Once living with a death sentence some people have had to adjust to living life with the promise of a future.

There is another treatment that is showing promise for ME/CFS patients. I think its pretty well known in the ME community that there is a correlation between ME/CFS and the lymphomas. There is a paper that was published that talks about a three patients who had both ME/CFS and non-Hodgkins Lymphoma. While undergoing treatment with Rituxan they had significant improvement in their ME/CFS symptoms! The only problem is the improvement is temporary. Once they relapsed again they were again administered Rituxan and had the same result. I'm wondering if this is the medication the WPI referred to when they mentioned that a medication cocktail might include anti-inflammatory medications, anti retroviral meds, and cancer meds. Heres the link to the article: BMC Neurology 2009, 9:28 doi:10.1186/1471-2377-9-28

As far as my own treatment goes I will be starting Arteminisin and Low Dose Naltrexone. The Arteminisin I'll take for 7 days then go off it for 7 days. Apparently with Arteminisin the body stops processing it after 7 days so you have to stop in order to trick the body into processing it again. We talked about other antivirals but decided on this because it has such a broad application. For those who don't know Arteminisin is used to treat malaria, parasites, and viruses.

I asked my doctor about my low blood sugar readings. While on Valcyte my blood glucose was on the higher side but off Valcyte it is consistantly low. He said that its likely that my cortisol levels are too low even after 18 months of Cortef. So I'll be doubling my dose of Cortef but still within the therapeutic range.

Dr. Cheney and Dr. Bell have both stated that they believe XMRV is likely a causitive factor in ME/CFS. In fact, Dr. Bell has called XMRV "the puppet master."

There's lots of interesting things in the works so lots of reasons for hope. I don't mean hope for a cure but hope for real treatment.

6 comments:

Thanks for posting the link to the Rituxan article. Very very interesting. I see my primary care dr on Friday and can't wait to show her the Science article. I know she'll be open to different treatment ideas.

Hope your sleep gets better. That's the worst. I'm still looking for just the right combination of sleep meds, myself.

I'm so sorry about your doctor. It's been such a rough year for you, losing two good doctors. Take good care of yourself the next few days. The Rituxan article is of special interest to me because, after 8 1/2 years of debilitating CFS, I was just diagnosed with a rare but non-fatal form of non-Hodgkins lymphoma that appears on the skin as an eczema-type rash. It's called cutaneous T-cell lymphoma. I've been given an ointment for it but my primary care physician is wondering if there isn't a link between it and the CFS.

A lot seems to happening to us all it once. It's hard to process, that's for sure.

I appreciate all the up to date information about ME/CFS treatments..and hopefully soon to be treatments...in this post!

Wow, to lose two great doctors...and so close together...wow. I remember reading your blog when Dr. K died. Great CFS docs are gems. I had a wonderful CFS doctor years ago who experienced a debiliating accident and wasn't able to continue practicing. It was devastating for him and the thousands of CFSers he treated who felt safe and secure in his care.

I am so excited to talk to my CFS specialist about the research findings and like you to learn how it changes our treatment plan. She has always talked about anti-viral treatment...Like you I'm ready...

My doctor's sister had CFS and then developed a form of leukemia. This is what fuels her work for CFS. She must have seen the link long ago...

How courageous are the docs who have believed in CFS and all of us long before the proof that is at last emerging.

Sorry to hear about your doctor. A good, sympathetic, thoughtful local doctor is hard to find. I live in New York city, and there are no good CFS doctors here.

I am a patient of Paul Cheney. He is right now recommending that patients take artesunate - a derivative of artemisin - on Tuesdays and Thursdays and Mediherb's wormwood solution on Monday, Wednesday, and Friday. He recommends that these be taken sublingually (swish and spit), since they will be absorbed but not enter the digestive track, where they can cause drug-induced hepatitis if used for more than a few months. He also is finding that artesunate/wormwood improve sleep quality, so you might try taking them or artemisin at night to improve sleep.

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I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help